Caregiver

[Margaret]

I hope that it is okay that a caregiver needs some support. Lord knows that the brave souls that are here fighting this terrible illness have to go through so much more than anyone else but as a caregiver, I find myself struggling at times. Hope this is not too long.

The funny thing is that learning to live “with” cancer was almost easier than learning to live “with out” cancer. When my husband got diagnosed, we were so focused on him and fighting this thing. I went to all the Doctor’s appointments, took him to chemotherapy, sat in the hospital for surgeries and traveled to Sloan Kettering for his RPLND. Not easy for a southern girl to be alone for her first trip to New York City. But I was on a mission and nothing was going to stand in the way of helping him get better.

Now we are blessed with the news that he is in remission…and I am thrilled and relieved but the adrenaline is pouring out of my body as fast as it entered. Some mornings I still feel like I should be heading to the cancer center. I miss their support and love and I also feel a sense of loss that I do not get to see the other patients. I felt a sense of purpose and now I feel a bit out of place. He seems like he is getting stronger everyday and moving on, back into his normal routine. I know things ‘should’ go back to normal but I feel changed in many positive ways by cancer and I don’t think things will ever go back to the way they used to be for me.

Just because we got our blessing does not mean I can turn off my worry and care for those still waiting for their cure. Maybe that is why I am on this forum; I have no one to take care of anymore. I felt so unmotivated and down after we got back from SK because I did not know what to do with the free time I have now that I have no one to care for. Is there anyone that can relate?

I hope no one is angry at me for feeling moments like this of selfishness while all of you are working so hard to get better.

Margaret

[dadmo]

Margaret:
You're not alone. My wife and I have turned that anxiety and energy into fund raising efforts to work for a cure for cancer. Our son, who was sick, is the only one of the three of us who now seems unchanged by the disease. All I can say about that is "good for him". We are almost three years out and my wife is still thinking it might be good for her to talk to someone. All in all I am a better person now then I was before and my wife and I have never been closer.

[Lori]

Margaret, you are not alone! The first couple weeks after our "your in remission" meeting I was a mess. I think this is the hardest part. Jon is still concentrating on recovering, but I'm in a I don't know what to do stage. I don't think I'll ever be back to normal, but do also feel blessed for all I've learned and how Jon and I have come together as a couple. We try not to worry everyday and tell ourselves that worrying doesn't do one darn thing. So now I'm starting to channel my energy into volunteering and fundraising. In fact Jon and I have been asked to speak at the opening ceremonies for Relay for Life - we are so honored and I can't wait to get the word out on TSE.

Please PM anytime you want to talk.

Lori

[Margaret]

Thanks so much all.

I know it sounds crazy but in some ways cancer was such a blessing for us. We were a true team for the first time in years and I know that God gave us this test for a reason. While we were fighting this together all the petty worries and issues seemed to go away...now when we debate about who will empty the dishwasher, I have to remind myself how lucky we are to still be here and feeling well. I am sure some of it is guilt too..how come we got good news while others don't? It just breaks my heart some days. But at least while I was going to the cancer center I could sit with people that had no one to keep them company, get them drinks and cookies, and lots of hugs. Now that life is back to normal, I sit at my desk all day and wonder if someone else has come along to pass out the hugs. I hope so.

Margaret

[ebfun7]

Me too

Margaret,

Gosh I'm glad someone has finally said something. I thought I was the only one. I spent the first few months after we got the "your in remission" going through a range of emotions. I was happy we had finally got the news we had prayed for. I was sad that others getting the same treatment as my husband were not so lucky. Someone who got high dose at the same time as him in Indiana this last summer just died at Christmas time and I knew they were not doing well and that bothered me daily. I would contact his girlfriend almost daily. I was angry that I had spent over a year focusing on my husband, hoping and praying he was going to live and not focusing much on our brand new baby. I felt like I got cheated. We got cheated. We never got to enjoy having a new baby, rocking her to sleep, the first smile, etc…. We were way too focused on my husband’s life. I thought about the time when he was in the Bone Marrow Transplant Unit and I couldn’t bring the baby in to see him and he would ask me to hold her up to the window just so he could look at her and I would think “please God let him be around to raise her.” It was awful and I was angry. It was almost like post traumatic stress disorder. I didn’t realize how stressed I was or how much it affected me until after things calmed down. But then like you said I would stop myself and remind myself that I was crazy. We were not cheated. We were blessed. He was alive, and in remission, and because of that there would be many more years to spend with the baby.

I also found that I was constantly worried about what ifs. What if the tumor markers go back up? What about the next CT scan? I was obsessed. It was all I could think about. It was almost like you were safer getting tumor markers once a week because then we knew exactly what they were. Waiting to get them once a month stressed me out. I looked at this board daily and I would see others not doing so well and that would scare me. I constantly wonder why my husband was doing great and they were not.

I am happy to say that my husband has had normal tumor markers since July. I also have started to return to normal. I am not as stressed and not as angry and now just really trying hard to channel my energy into helping others with cancer, raising our daughter to the best of my ability, and making sure I do not ever take our family for granted. I know we have been very very lucky. My husband was very advanced upon diagnosis and it made me so happy to hear Dr. Einhorn say at his last checkup that he was not worried about Ken’s tumor markers anymore, that he thinks Ken is going to beat this, and that come June (when he began high dose last year) his chance of reoccurrence drops from about 10% (what it is now) to about 5%. I can handle 5%.

So now I look forward to the future. I look forward to helping others. Cancer has changed us. It changed me and my husband and our relationship for the better. We have grown closer through it, although it has been rough. But I am finally getting to a place where I can say that I’m glad Cancer happened to us. Gosh I never thought I would say that.

Got to run, my baby is learning to crawl and she has just made it to the top of the stairs.

[Rover]

I say ditto to Dadmo. Getting involved in fundraising and cancer advocacy is a great way to redirect the energy brought out from a fight against cancer. It can be rewarding and productive. It's not easy to turn off all that drive, some people can and choose to leave it in the past and move on. That's fine too.

While getting zapped last fall I read this article from Cure Magazine in the waiting room. Well tried to read, tough to focus when your in the middle of it all. This is a link to an article that talks about things such as a "Survivorship Prescription." Very good.

http://www.curetoday.com/backissues/v5n3/chapters/survivorship/index.html

In fact, the whole Special Survivors Issue is packed with great info.

http://www.curetoday.com/backissues/v5n3/index.html

A number of articles highlight the areas that need improvement. I found it encouraging to know there are people out there actively working to improve all aspects of Survivorship.

I had gone almost a year before finding out I had cancer again. The anxiety that surrounded each surveillance appointment had just about gone away. Never stopped thinking about cancer but without the anxiety the thoughts were positive and I could finally consider all the blessings that have come from cancer. Still rather fresh from the second go round there is some anxiety as I get close the next appt but really not too bad. I look forward to seeing the doctors, nurses and techs that have become my friends.

-chris

[huckchef]

I think we all can understand where your coming from. Our spouses, family and friends all go through this life changing experience with each of us. Like you, I feel as though I have changed. Things are different now than they have ever been before. More clearer, more vague, more worthy. I think it's something "WE" all go through. Some different than others, some more than the next. "WE" will be this way forever, I believe. It's our calling to be this way and lead others who are entering this santuary that we hold close to us. So don't stop being who "WE" are.
As I have said before, "We" are the lucky one's!
Brian

[Chris'Mom]

I was glad for this post...thinking I am the only one....when Chris was going thru chemo...and surgery, I had the reassurance of Dr.s and nurses.daily..and just being "in it" was comforting.for months it was my mission in life to get him thru it...not let him worry, get him the best care.....and now Chris is almost two years out...feeling great. markers great..but it is just not the same for me. I worry almost tothe point of making myself sick when he has blood work and I call for results...he visits Sloan on March 1 and I am always so anxious. even though things for Chris have been going great. I do the Relay for Life here in our area, and that is something I feel good about...Chris doesn't really talk about his cancer...like it never happened...but I wonder if that is how he really feels...he will twenty-two on Valentines Day...(I can't be that old can I) I was married at 22!!!....but I still want to make things ok for him...which I can't.....sorry to ramble...but I hear all of you and your feelings..thanks for the post....Mary Ellen

[Chris'Mom]

I just read that Brian, and yes, we are the lucky ones...we won't be the same,,,but maybe that is not a bad thing...I think I stay on this sight because of course to maybe give a word of encouragement to others ....but also for myself...I just can't let go....It scares me ...like if I do...something could happen to Chris..I know that sounds weird...but I need this sight still after two years....thanks for listening......Mary Ellen

[kmom49]

"lucky ones"

MaryEllen

My son - 3 years past and I'm right there with you!! I see things in a whole different light as everyone else has said but that incredible fear never goes away for me. It's wonderful to have this site to turn to, for comfort, encouragement, and good/great news. We are blessed.

Kathy

[Chris'Mom]

Thanks Kathy, It is so nice to have others who have gone thru the same thing...and have the same feelings....Mary Ellen

[jdunn]

Ok...my 2 cents worth...I'm right with you gals. (and guys too) Today is the 2 year anniversary of Josh's orchiectomy. I still remember the sick feeling as if it were yesterday. Time does heal but the feelings and emotions I think will always be there. It's hard to explain but I know you all understand completely. It's nice to be able to share. love ya

[Karen]

When Ray was diagnosed I was driven and focused to read all I could, question everything and everybody, and focus all my energy on making sure he was getting the right opinions, treatment and follow ups. During that time he avoided all of that and just wanted reassurance from me that'd he'd be OK. He will, on rare occassions, check this site. I'm on every day. I search the scientific literature at least once a week. I worry before every appointment...he never seems to think about them. It seems that this disease has taken more of a toll on me and I feel more of an obligation to give back for all that we've been blessed with. If it weren't for this site I don't know what I'd do since none of our friends have a clue he has (had) TC. I am the one he leans on but I don't have anyone there for me, and it gets really lonely. I am so greatful to know I can come here and vent and cry...like now.

[huckchef]

You are all amazing women! I give you a big hug and thank you for all you have done and are still doing. AWESOME!!!!!!!

Thanks,
Brian

[Chris'Mom]

Jane, our sons went thru it at the same time, so I know you know how it is....and you have been a great friend thru it all to me...and Karen, Chris is the same as your husband, he really left it to me to get the info, read on the internet til 3:00 in the morning...but it does take a toll....in the back of my mind...I will be having a great day, and then that little voice always is there...Chris had cancer...sometimes I still can't believe it....I am and always will be so glad for this site and all it has done for me...Mary Ellen